Pan-Canadian Health Strategy Expert Advisory Group says work to implement a world-class, person-centric health data system must begin immediately

The pan-Canadian Health Data Strategy
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Raman Singh
Senior Associate, Strategic Communications
Sussex Strategy Group
[email protected]

The true obstacle to effective health data collection and use is not mainly technological, but a matter of policy and governance

TORONTO, May 03, 2022 (GLOBE NEWSWIRE) — Today, the Pan-Canadian Health Data Expert Advisory Group (the EAG) released its third and final report, Pan-Canadian Health Data Strategy: Toward a world-class health data system, stressing the need for a standardized, person-centred, interoperable, securely protected health data system as vital for the future of health care in Canada. The report builds upon the EAG’s work over the last 16 months to research and review the current state of Canada’s health data ecosystem and develop advice for the federal government on how to successfully advance a pan-Canadian health data strategy in jurisdictions across the country.

The first two reports, published in June and November of 2021, identified the barriers impacting the success of a unified national health data strategy. These include a historically fragmented approach to health data, lack of trust and clear accountability, a culture of risk aversion and avoidance, misaligned priorities, absence of a common vision, competing private-sector vendor software systems, outdated data privacy policies and governance models, and lack of public, health care provider and sector leadership literacy of the crucial role of high-quality personal health data.

“Health data is gathered, organized, and managed poorly in Canada. We have hospitals, primary care providers, and public health agencies all operating with different technologies, standards, and data systems that don’t talk to one another. However, the fundamental challenge we face is not one of technology, it is one of culture. A piecemeal approach and legacy of mistrust means our progress has been slow,” said Dr. Vivek Goel, CM, Chair, Expert Advisory Group, Pan-Canadian Health Data Strategy. “We hope that our final report will provide the momentum needed to take action and make lasting and meaningful change.”

The federal government established the pan-Canadian Health Data Strategy Initiative in response to the COVID-19 pandemic, tasking the EAG to provide broad strategic policy advice on the development of a pan-Canadian Health Data Strategy. COVID-19 highlighted that the absence of a national set of standards for the collection, sharing and analysis of health data hindered Canada’s ability to accurately track the spread of the virus, respond promptly, and track vaccine coverage.

The EAG’s final report identifies that Canada’s current custodian-centric model, where a patient’s health information is fragmented between the IT systems of different health services, often leaving health care providers and patients with incomplete and uncoordinated information about their medical history. The EAG recommends adopting a person-centric approach to health data that gives patients, and their health care providers, access to their personal health information – promoting informational continuity. A person-centric approach brings significant benefits leading to better quality care, supporting public health and enabling health research that allows Canada to move towards a learning health system.

Updates to data privacy policies and legislation and stronger governance mechanisms are required immediately to move this work forward, in tandem with meaningful collaboration between the federal government, provincial and territorial jurisdictions, and First Nations, Inuit and Métis peoples. An equitable health data system is one where all Canadians and their health care providers, can easily access their health data – medical history, disease diagnoses, allergies, and prescriptions – during the various stages of their life through an integrated system. This will not only benefit the care patients receive but advance population-level health research and analysis.

“Health data literacy and the role of health information professionals has never been more needed across the country than it has been over the past two years. For example, due to a lack of comprehensive data, we still likely do not have a full picture of the impacts of the pandemic in Canada’s long-term care homes,” said Jeff Nesbitt, CEO and Registrar, Canadian College of Health Information Management and Canadian Health Information Management Association. “We were pleased to see government acknowledge the importance of digital infrastructure in improving health outcomes in the latest federal budget. Health information is fundamental to providing quality health care and it is critical that the government fund and champion a pan-Canadian health data strategy that prioritizes interoperability.”

In its final report, the EAG has proposed a framework and critical actions necessary for expediting the work to create a world-class health data system. The 10 recommendations for jurisdictions across Canada include:

  • Endorsing a set of common principles in a Canadian Health Data Charter to guide the implementation of a pan-Canadian health data system by 2030.
  • Respecting First Nations, Inuit, and Métis Nation data sovereignty across the country with a distinctions-based approach.
  • Establishing an independent and competency-based pan-Canadian Health Information Stewardship Council, in collaboration with substantial federal funding support, to design and drive stewardship of the health data foundation and provide advice on health data investments to jurisdictions and First Nations, Inuit, and Métis Nation representative bodies.
  • Establishing one or several government-led Learning Health System (LHS) Table(s), together with First Nations, Inuit, and Métis Nation representative bodies, to create and drive work on an integrated learning health system roadmap, supported by substantial new funding.
  • Establishing meaningful and ongoing engagement with the public and stakeholders to understand their health data needs and expectations.
  • Developing communications plans with the public and other stakeholders to demonstrate how their health data needs and expectations are being addressed.
  • Establishing a policy framework for data stewardship that mandates appropriate interoperability balanced with security, confidentiality, and respect for privacy.
  • Establishing a harmonized pan-Canadian health data policy framework that supports person-centric data and the stewardship model of health data management.
  • Establishing common integrated health data standards and data architecture and driving and monitoring their rollout.
  • Establishing an accessible approach to digital and health data literacy to increase understanding amongst all health data users and providers and expand professional standards for critical health data roles.

The final EAG report highlights several opportunities and proposed first steps to begin driving change and overcoming obstacles to success. Under the federal government’s stewardship and management, Canada’s health data partners can advance health data collection, access, sharing and analysis that improves responses to public health threats, identifies early intervention opportunities, improves access to care, and achieves equitable health outcomes for all Canadians.

About the Pan-Canadian Health Data Strategy Expert Advisory Group: The Expert Advisory Group (the EAG) was established in the fall of 2020 to provide advice and guidance on moving forward with a pan-Canadian Health Data Strategy. The EAG membership is composed of experts from diverse geographic areas across the country with wide-ranging expertise across health systems, public health, and population health data with perspectives on analytics, data management, and privacy. The EAG is chaired by Dr. Vivek Goel and was provided secretariat support via the Public Health Agency of Canada.

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